Frequently Asked Questions
Please find a number of Frequently Asked Questions asked of the CF center staff.
If I have to go into the hospital, doesn’t that mean I have failed at my therapies?
No. It is not uncommon for a CF patient to need hospitalization. It does mean that you need more advanced treatment than you can get or do at home.
If I have to have a gastrostomy tube placed (a tube that goes from the skin to the stomach), does that mean I'm dying?
No, it doesn’t. Many people with CF have trouble eating enough calories to maintain their weight or to eat enough to grow big and strong. Having a Gtube simply allows for tube feedings (often take place over night) to help supply more calories needed.
Is a 504 Plan the same thing as a Health Plan and which one should I ask for at my child’s school?
Health Plans and 504 Accommodation Plans are different plans. Many people assume because CF is a “medical condition” that a “Health Plan” is what is needed at the school level. Health Plans contain information only relating to the health of the child and are not inclusive of other areas of needs that may require accommodations.
A 504 plan “ensures that the child with a disability has equal access to an education.” The child on a 504 may receive accommodations and modifications in any area of need related to the disability; to include medical, environmental, social/emotional and academic needs.
Why can I eat the high fat, high calorie diet but my brother can't?
People with CF have problems absorbing the nutrients in the food they eat. Therefore, we ask people with CF to eat higher calorie foods with more fat than the average American’s diet recommendations.
- I'm sick. What do I do?
Doesn't drinking milk increase mucus? Should a person with CF avoid milk?
No, drinking milk does not increase mucus. A person with CF can safely drink milk as part of their healthy diet. This myth has been around for centuries, according to our research.
Here’s some information from the Mayo Clinic:
Vick’s Vaporub on a child’s feet and then put socks on, is this okay or not? Apparently, somewhere on the internet states not to do this for CF kids, because it is a cough suppressant.
Actually, putting Vick’s Vaporub on a child’s feet and then putting socks on has no effect on a child’s cough. This is an urban legend. There may be some stories out there that claim it work, but there’s no scientific evidence that it hurts or helps suppress cough.
I'm in a study, and I see the research coordinator and doctor all the time. Why do I have to come to clinic?
First, thank you so much for participating in CF research! Although it does seem like you do the same thing in study visits as you do in clinic, that’s not the case. We ask you to come to clinic quarterly in order to assess your sputum, your blood sugar, and labs not commonly assessed in study visits. In addition, we follow the CF practice guidelines which dictate quarterly clinic visits in order to facilitate social worker, dietary, and respiratory therapy visits as well as doctor.